Posted by Kim Fracchia on December 07, 2016
If you are like me, there are times you are on pins and needles with your child that has Crohn’s or Ulcerative Colitis; wondering if they will continue to do well or if the next cold that requires antibiotics or a bout with the flu may take you back to square one in your attempts to get IBD under control. It is the unknowns that scare me about dealing with this disease...
will he be able to do the things (sports, sleepovers, camps) that he wants to do; can his body tolerate the intensity of workouts needed for high school sports; is he eating right; is he getting enough rest; will he be able to tolerate this new medicine and will this new medicine be the one we have been waiting for that will put his disease into remission? As a parent we all have worries, along with hopes and dreams, that our children may accomplish whatever they wish to achieve in their lives. As the parent of three children, I find that I have different worries for each child. The concerns that I have for my oldest happen to center around his health and I sometimes feel so powerless to help when his symptoms have gotten out of control. I think that for this reason, I decided to get more involved with ImproveCareNow (ICN) - to learn all I could and to help my child.
I found that once I became more involved with ICN, I was able to educate myself about the disease as well as options for treatment. I learned that my child’s doctor is part of this incredible collaborative that has the highest standards of care as a goal for each center. This alone helped alleviate many of my worries. Yes, my child has this disease, but I am comforted to know he is receiving the highest standard of care. I have been involved with ICN for four years and have been the Membership Chair for the Parent Working Group for the past two. Throughout my involvement with ICN, I have learned just how much a concerned parent can do and it has been exciting! I have seen parents begin IBD support groups and Teach Nights in their communities; put together new patient binders for their centers; help their centers establish group visits and protocols; provide funding to hire child life staff for their center and even establish foundations that look at researching specific diets. Parents and patients have a huge interest and investment in wanting great care and I am so thankful that ICN not only listens, but encourages input from us. If you would like to be more involved in ICN and the Parent Working Group, I would love to hear from you! Please connect with me here.